BMJ Evidence Based Nursing
Editorial by Alison Twycross, Brian Hughes & Karen Hargrave
Extracts
The COVID-19 pandemic has transformed our understanding of healthcare challenges, with long COVID emerging as a significant current and ongoing public health issue. For governments across the four UK nations, this presents both a challenge and an opportunity to build a National Health Service (NHS) that truly responds to the needs of all its patients, particularly, those with long COVID and myalgic encephalomyelitis (ME).
A recent policy brief draws on the results of an online survey carried out in June–July 2024, which asked patients with long COVID and ME to evaluate parts of Labour’s mission plan for the NHS against their experiences of care.
The policy brief is part of #ThereForME, a patient-led and carer-led campaign, supported by 18 organisations and smaller initiatives, calling for an NHS that is there for people with long COVID and ME. In August the campaign shared the policy brief’s findings with the UK Secretary of State for Health and Social Care, through an open letter signed by over 2600 patients and carers.
Three key areas for improvement in the NHS
The policy briefing outlines three critical areas where the Labour government can make effective changes to improve care for patients with long COVID and ME:
1. An NHS that is there when people need it
- Current deficits: Two thirds of respondents said that the NHS is not there for them when they need it. Many have sought private healthcare because of the lack of adequate support from the NHS. Those who are severely affected, and their carers, feel completely let down by the system.
- Recommendations: The government must articulate a clear vision for an NHS where long COVID and ME patients are listened to, believed and receive safe, accessible and long-term care. This includes the urgent publication of the cross-government implementation plan for ME/chronic fatigue syndrome and the appointment of a Minister for long COVID and ME.
2. Care in the community and at home
- Current deficits: Access to community-based care is very poor. Only 4% of respondents felt supported by the NHS to manage their symptoms at home. Many clinicians lack knowledge about ME and long COVID, leading to inadequate long-term monitoring and support.
- Recommendations: There is a need for better support in primary care to ensure that clinicians are well informed and that patients have access to continuity of care. The introduction of technology-enabled solutions, such as wearable devices for remote monitoring, can significantly improve patient management at home.
3. Harnessing science and technology
- Current deficits: Only 2% of patients feel that the UK is using its science and technology expertise to advance treatments for long COVID and ME. There is a significant gap between new research and clinical practice.
- Recommendations: The government should commit to providing at least £100 million a year in research funding for long COVID and ME, focusing on biomedical research and clinical trials. Collaboration between researchers, clinicians and patient advocates is crucial to developing effective treatments and ensuring that new research findings are incorporated into clinical guidelines.
The way forward
To truly transform NHS care for people with ME and long COVID, the government must take bold and decisive action. This includes not only increasing funding for research and improving clinical care but ensuring that the voices of long COVID and ME patients are central to health service planning and policy development.
MEA Comment
Emma Jefferies, Communications and Social Media Lead says:
The ME Association is one of 15 organisations that continues to support the #ThereForME initiative, a patient-and carer-led campaign that calls for an NHS that’s there for people with ME and Long Covid.
In August of this year, we were pleased the new Labour government stated that they are committed to publishing the Department of Health and Social Care Delivery Plan on ME/CFS. The dissemination of the information, including recommendations for research, could be seen as one of the first steps towards transforming health and social care.
However, as highlighted in this article the issues patients face need to be addressed, and further action and commitment from the government at the highest level is urgently required for healthcare reform.
Emma Jefferies
Communications and Social Media Lead, ME Association
Further information
- #ThereForME: Building an NHS that’s there for people with Long Covid and ME | July 23, 2024
- Labour government commits to publishing the final delivery plan on ME/CFS | August 7, 2024
- ME Association Statement: Improving healthcare for people with ME/CFS and Long Covid | May 14, 2024
- BMJ Evidence-based Nursing: Long Covid – What can we learn about the cause and management from ME/CFS? | November 14, 2022
